Welcome to the OR EDS Homepage!We are currently undergoing web reconstruction Please bare with us as this will be a ongoing process through 2015

OREDS PicnicSaturday, August 1, 2015 1-5pmOur next meeting will be a picnic at the beach park, George Rogers Park in Lake Oswego. Please RSVP and reply with any questions to info@oreds.org. The picnic is no host, so please bring your own food and picnic supplies.

Can Low Blood Pressure be a problem? with Dr. Emilia ArdenAugust 22, 2015 3-5pm @ ME Fitness Studios4943 NE Martin Luther King Jr. Blvd. Portland, OR 97211RSVP'S REQUIRED FOR THIS EVENT AS WE WILL NEED TO ENSURE THAT WE HAVE ENOUGH CHAIRS. Please RSVP to info@oreds.org. We are expecting a large turnout for this very important speaker.

Come together to share, find support, and ask questions with your local OR EDS community.See Meetings Page or click on Next Meeting link above for more details on location and upcoming events.

We're a newly incorporated non-profit organization representing a steadily growing group of patients with Ehlers-Danlos Syndrome and their families, friends and doctors in the greater Oregon area on the US Pacific Northwest seeking to support one another in our journeys with this challenging condition.

Meetings will be held monthly, supportive in nature, every other month we alternate between educational speakers and support style meetings, with a social event about twice a year. There is always a board member on site to moderate.

Subgroups are starting to form thanks to recent growth and awareness. We are working on becoming a 501c-3 at this time. We welcome all interested, including those "suspecting", which is all too common.

2013 OR EDS Mini Conference DVDs For Sale!$30 DVD + $5 ShippingE-mail treasurer@oreds.orgInclude number of DVD's you want and shipping address. See a trailer here

We are not tax-deductible yet, but that is in the works.Thanks for your patience!

HUGE thanks to Governor John Kitzhaber for continuing to declaring MAYOfficial Ehlers-Danlos Syndrome Awareness Month in the State of Oregon by Proclamation each year!We are very excited to share that we are now incorporated in the State of Oregon as a non-profit business as of November 2013!

Find link to EMERGENCY ROOM INFORMATION FOR PHYSICIANS HERE(Doctors assume you have a VEDS case until find definitely otherwise - many are un or under-diagnosed presently!)

Fans of the daytime TV show Katie (Couric, formerly of the Today Show) were treated to an introduction to Ehlers-Danlos Syndrome on Tuesday Dec 10, 2013 that was fairly well presented, featuring the Huber and Tyson families from Texas who were mistakenly accused of child abuse before they were able to get diagnosed. That said, we would encourage those experiencing high rates of bonefracturing in particular in their families with clear signs of EDS or hypermobility to look into a closely related connective tissue disorder, Osteogenesis Imperfecta, aka "Brittle Bone Disease" with a knowledgeable medical geneticist. It primarily involves mutations in COL1A1 and COL1A2 as shown at the UW Collagen Diagnostic Lab who performs testing for several of the more rare types of EDS as well as other HDTCs including OI. (There are 12 other genes involved in some rare autosomal-recessive forms of OI also, so being negative for COL1A1 or 2 does not fully rule it out). And also know that the most common type of EDS by far, Hypermobile Type or HEDS has no single tissue marker identified yet and so can only be diagnosed clinically using the Brighton Diagnostic Criteria so far. See our About page to learn more on all types of EDS.

Ehlers-Danlos Syndrome is a group of genetic collagen defects that affect a very wide array of body systems in a surprisingly wide variety of seemingly unrelated ways, including everything from painful "loose" joints to the GI tract, vascular system, teeth, feet, eyes, mood, insomnia, migraines and sensory processing to name a few. This lends to the challenge of diagnosing the condition as patients end up seeing an equally wide array of doctors and specialists in their sometimes decades long journeys to being diagnosed. Symptoms can vary equally widely in severity and nature of onset, adding to this challenge for both patients and doctors. Some experience just one or two problem joints going out easily or repeatedly at first. Others start experiencing fibromyalgia and widespread joint and muscle pain, weakness and fatigue initially. Many experience migraines and lots of food and drug allergies or sensitivities. Depression and anxiety are quite common and may be organic in origin, as well as secondary. It often comes as a great relief to know there may be just one underlying condition responsible for so many issues in a person's life. We like to say Ehlers-Danlos Syndrome isn't rare, it's just rarelydiagnosed. (Castori et al have cited as high as 2% of the general population in 2012.) Learn more at the link above. Many find this handout from Dr. Alan Pocinki at the EDNF 2010 conference to help inform their doctors quickly:

The information in this web site is provided as a free public service. The information contained is for educational and informational purposes only, and is not intended to serve as or replace professional advice, whether medical or otherwise. Consult your own qualified physician or other health care professional regarding your individual needs.